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Two Years after My Adrenalectomy

March 13, 2020. 

Friday the 13th, no less. I still remember the hint of uncertainty in the voice of the surgeon’s administrative assistant when she called me to tell me the date that my surgery had been scheduled. There are probably a fair number of people who would have turned down a surgery scheduled for a Friday the 13th, but I was desperate to get rid of the tumour that had turned my life upside down, and I had no such superstitions.

I’ve written in various places about my life with pheochromocytoma, my journey to diagnosis, and how my life changed afterward. But it’s still a topic that I find myself thinking about regularly, a topic I have more to write about, and a topic I want to keep writing about. One reason is that my pheochromocytoma posts receive regular visits from Google searches literally around the world. I have a feeling that they’re being read by people searching for their own diagnosis, people who have just received their own diagnosis, people who are wondering what’s going to happen next. 

That’s certainly something I did. The night I got the first lab test results that indicated that the underlying cause to everything was in all likelihood a tumour in my adrenal gland, I Googled the heck out of all things pheochromocytoma. By the next day, I could have told you what diagnostic imaging was available and what was preferred by doctors to confirm the diagnosis, how an adrenalectomy was performed, and what studies said about the correlation (or lack thereof) of tumour size to symptoms. But while I did my fair share of Pubmed reading, I also read every story that I could. How were people’s symptoms similar to mine? How were they different? How did people get diagnosed? Did they also have such a hard time getting a diagnosis? (yes, they did.) What had been their experiences in surgery? What was their recovery like? 

Today, two years after a life-saving and life-changing surgery, here are a few of the reflections I’ve had recently. 

One: I’m one of the lucky ones. My surgery was completed laparoscopically and went incredibly well. Don’t get me wrong – I felt like I’d been hit by a truck afterwards. Laparoscopic surgery is still surgery. But I was left with three small incisions that healed well. Pathology and post-operative monitoring left no reason to suspect a malignant tumour. (With pheochromocytomas, it is notoriously difficult to discern a malignant vs benign tumour, and really, the only reliable sign is metastatic cancer that has begun to grow elsewhere in the body.) Follow-up genetic testing so far hasn’t revealed any genetic cause, which is incredibly fortunate because it reduces the likelihood of my remaining adrenal gland developing another pheochromocytoma. Following other pheochromocytoma patients through social media has given me a window into the experience of living with a malignant pheochromocytoma. Sometimes when I read their stories, I can’t believe that I got to have surgery and never look back (except reflectively). I can’t imagine what these patients go through day after day, year after year. 

Two: I know I’m lucky. Really, really lucky. But I don’t always feel lucky. I wrote in my very first blog post about pheochromocytoma that my journey had started four years previously. But it became really obvious once I started losing symptoms that I had actually been living with the tumour for something more like ten years. Facebook memories continually remind me of just how much my life was disrupted by constant, ever-evolving, and ever-increasing-in-awfulness migraines. To think about ten years of life affected in this way – it really sucks. It’s great to have good health to enjoy now… but what would my life have been like without those ten years of awfulness? And that’s just the physical side of things. I have done a lot of emotional healing post-surgery. But I’m still not completely healed from the trauma of this experience. I keep a very close eye on points of data that might indicate a tumour recurrence. Sometimes when my resting heart rate is high, I need to take some deep breaths and remind myself that I just had Covid, or that I literally didn’t get a chance to sit down during the day. (My resting heart rate dropped 30 points after surgery. Since my watch gives me this data daily, it’s easily accessible to monitor.) After years with headaches happening almost daily, the change to being headache-free was shocking. But it makes it hard to have a headache now without wondering what’s causing it. I also have bloodwork done annually to monitor my metanephrine levels. It’s hard not to worry while waiting for these results. I am working hard at living in peace and not in fear. But it’s hard work. 

Three: I wanted a story to be able to explain things. I had been so sure that I would receive news from genetic testing that the cause for my tumour was genetic, that it was very unsettling to receive the news that there is (so far, at least – genetic testing for pheochromocytoma is still a relatively nascent field) no genetic mutation that explains my tumour. My surgeon had been quite sure I was a genetic case. My age alone made it likely. I was so unsettled after speaking with my genetic counselor that it took me a little while to realize this was actually good news. A genetic mutation would reveal the cause for my tumour, but it would also point to likely recurrence or future follow-up needed; it would plot the path for monitoring. Instead, I need only the most basic – my annual metanephrines test. No fear of another endocrine system failure in the future (à la MEN 2, definitely the scariest possibility). Definitely not von Hippel-Lindau – very good news. Et cetera, et cetera. Go down the list of mutations and their scary consequences… and I was glad to have avoided them. So why was I so set back? It took a while for me to realize that the genetic mutation story was a story that I could tell to make sense of my experience. Yeah, it would suck. But the tumour would have had a cause, and I had received the treatment, and we could all wrap things up with a nice bow. But now I have no origin story. My body grew a tumour just because. And can you ever really trust your body again after that happens? 

Four: I am indeed learning to trust my body again. I’m still working on trusting that I won’t grow another tumour. But there was another area that I needed to learn to trust my body and the messages it was giving me. For more than four years before diagnosis, I had gone to my doctor again and again with new symptoms and irregular blood work, and I was shrugged off each time. Yes, your platelets and white blood cell counts are high, but they’re not that high. That shaky feeling? It’s not blood-sugar related. No need for any further follow-up. By the time that I was visiting the emergency room, I was given the message implicitly that I could not be counted on to explain what was happening, or that I was exaggerating, or that I was wrong about the severity of what was happening. Sometimes the message was explicit – like on one visit where three different medical staff members told me that perhaps I was just experiencing a panic attack. One side-effect of these messages were to make me stay home from the hospital when I had a pheo crisis. It was so miserable to be in the hospital and not be believed, and they didn’t do anything to help, anyway! It was the belief that I might not actually live through the episode that finally sent me back to the hospital the time that I finally met the right doctor who made his miraculous diagnosis. 

Years of learning to ignore my body’s truths isn’t undone overnight, but I’m working on it. It’s helpful when I have a headache to be gentle with myself, to treat my body with kindness, to believe the message it’s giving, and to be curious about the cause, which of course helps with the fear of recurrence anyway. In many ways, the physical healing was the easy part. Remove the cause of the extra adrenaline in my body, and my hormones all normalized, and the cascading consequences of their imbalance slowly (or quickly, in some cases!) disappeared. The emotional and mental healing require more time. And I think it’s okay to take my time. My body will always bear three little scars along my back, the only outward signs of the surgery from two years ago. What emotional and mental scars I will always have yet remains to be seen. Just as my physical scars have lightened month after month and are continually less noticeable, so too will my mental and emotional scars continue to grow lighter and less noticeable.

Still one of my favourite graphics about the symptoms of pheochromocytoma
Posted on by bethanypasma · 5 Comments

One Year

Exactly one year ago today, I underwent surgery to remove my adrenal gland – and, more importantly, the tumour that had grown within that adrenal gland. 

I’ve written about life with pheochromocytoma, my struggle to be diagnosed, and how life changed afterwards. If you’ve been around for long enough, you certainly know most of this story. But please indulge me again, because this is easily one of the most significant events in my life within the last decade. 

I wonder how much we can appreciate our health until it’s gone. I think it might be one of the easiest things to take for granted unless and/or until it disappears. I might be a very strange case, because I didn’t realize that my health was gone until it was restored to me. That sounds crazy, I know. But it’s only in retrospect that I can see the long slow descent into poor health that took over a decade. I didn’t know it was happening at the time. 

By the time that I was going to the hospital emergency department, I obviously knew something was wrong. By that time, I was convinced I might actually be dying. But even then, I described myself as okay in between my crisis episodes. I just didn’t know that I wasn’t okay. 

I didn’t know. I didn’t know how much health was lost and what needed to be restored. I couldn’t remember. But God knew. God remembered. And God restored. 

One year ago, I underwent surgery to remove my adrenal gland and, more importantly, the tumour that had grown there that was producing extra adrenaline – sometimes 20 times the adrenaline my body should have had. I knew that I would feel better after surgery, but I just figured I wouldn’t suffer those awful life-crushing crises any more. I didn’t know what God had in store for me. 

Let me give just one example.

I used to wake up with a headache almost every day. A person just can’t actually take Advil every day of their life, no matter how much they may want to, so I would wait and see if this was the type of headache that would go away, the type of headache I could ignore, or the type where I really did need to take some Advil to make it through the day. Somewhere between 3 to 7 times a month, the headache would develop into a migraine. I am so thankful that I didn’t have some of the worst migraine issues – I rarely had photosensitivity or problems with noise. (When you often end up sucking it up and continuing to teach through the migraine, that’s really, really fortuitous.) But I did often have awful nausea accompanying the migraine, getting worse as the day went on to the point that I would just try to lie absolutely still in my bed so that I would just have the migraine headache to deal with. Migraines run in the family, so this was just an unfortunate genetic inheritance, it seemed. 

As the weeks after surgery went by and I kept feeling better and better, I stopped waking up with headaches. I was thankful not to have any migraines, but I wasn’t really holding out any hope that they were gone for good. I expected them to be a part of my life forever. But time kept passing and I just never got a headache, let alone a migraine. Over the summer, I flew to Alberta and stayed with my sister, taking care of my nephews. When the older one started school in September and came back with a cold, one morning I woke up with a bit of a sore throat and a headache. Just a headache, nothing more. But I was pretty miserable, wondering how did I do this almost every day for so long? 

The real benchmark for me was a week of lost sleep before coming to Guatemala. With variants of concern identified in Canada, I often lay awake in bed for hours, wondering if I would really actually be able to fly out of Canada and enter Guatemala. I never had the slightest bit of a headache. Previously, lack of sleep had been my number one migraine trigger. While getting a good night’s sleep wasn’t enough to prevent a migraine, not getting enough sleep pretty much guaranteed that I would pay with a migraine. We arrived in Guatemala close to midnight, and with the time going through customs and immigration, driving from the airport, and getting settled in at a new place, I fell asleep well after 2 am. With the time change, bright sunlight shining in, loud motos driving by outside, and dogs barking in the street, I woke up at 5. While I felt absolutely exhausted, I had no headache. No migraine. Nothing. I could only marvel at the goodness of God in the timing of this healing. 

It’s not just the goodness of not worrying about a tumour or about the next crisis. It’s the day to day goodness of good health. It’s the gift of being in a new country and a new job and new community and feeling good, every single day. 

I do not take this for granted. I literally thank God for my health each day. 

Posted on by bethanypasma · 2 Comments

My Last ER Visit, or In Praise of the Right Doctor

The school year started the way it always does – first for teachers, then for students. I spent two weeks re-organizing my classroom, printing a few last pages from the unit I had rewritten during the summer, excitedly greeting coworkers as we saw each other for the first time after the summer, in meetings, in more meetings, frantically trying to get last minute details ready before the open house where I would welcome students and parents into my classroom before the first day of school. 

It was the whirlwind it always is. Seriously – it is never not a whirlwind. But things came together the way they always seem to, and I enjoyed meeting the new students I would be teaching. I went out for a late dinner with friends, even ran into a friend from church and stayed for quite a bit longer talking to him after my friends left while he was waiting for his food, and then went home to fall into bed, exhausted. 

I woke up the next morning feeling absolutely awful. I assumed it was a migraine. It wouldn’t be unusual after a stressful and very busy week where I hadn’t been sleeping well to end up with a migraine. I took some Advil and went back to sleep. 

I woke up an hour or so later and immediately realized with a sinking feeling that it was NOT a migraine. My hands felt shaky and I was jittery. I didn’t have any chest pain yet, but I knew after so many times through this routine that it was only a matter of time until my chest would tighten so unbearably that lying down would make each heartbeat physically hurt and would keep me awake no matter how desperately I tried to sleep. Then, sooner or later, the vomiting would start. It didn’t matter that I wouldn’t eat anything after the shaking started in an attempt to mitigate how awful the vomiting was. Something had set the symptoms in motion, and there was nothing to do besides wait them out. Wait in absolute misery. 

I decided not to go to the hospital. I was frustrated with my experiences with the health care I had received up to this point. I knew from experience that a visit to the ER would mean defending myself to various doctors and nurses. I wondered if I would be told yet again that I was probably “just having a panic attack”. I would be given numerous tests, none of which would reveal what was wrong. I would have to endure the time at the hospital miserably trying not to vomit in front of complete strangers, receiving nothing that actually helped the chest pain, until hours later it dissipated enough for me to be discharged and call a friend to come pick me up, taking with me a handful of referrals to give me some small hope for a future diagnosis. It was so awful being horribly sick in the hospital and not getting any noticeable benefit that I decided not to go at all. I decided I would rather be sick in the privacy of my own home and just hoped that the one specialist appointment I had lined up for later in the fall would provide the answers I so desperately wanted. 

By late afternoon, the vomiting had started. It was pretty early in the cycle for vomiting, actually. The symptoms seemed to be getting worse with each mysterious bout I had. I had thrown up for 16 hours the last time… how much more awful could it get yet? I sat down on my living room floor and cried. I absolutely despaired of ever finding out what was wrong and of it ever getting better. 

Half an hour later I was gasping for breath and brushing tears off my face yet again, these tears squeezed from my eyes by the sheer force of the vomiting. I tried to massage a cramp out of my ab muscles. I honestly wasn’t sure I was going to survive through symptoms that kept getting worse and worse. It was past time to go to the hospital, and I would just hope to end up with a doctor who a) actually listened and b) had any clues about what was wrong. 

And miraculously, that is what I ended up with. 

But not quite right away. 

Actually, I really can’t fault my first ER doctor at all. He was extremely compassionate, and he listened carefully and never suggested it was stress or a panic attack. In fact, he looked through  my bloodwork and enumerated my irregular results, explaining that while vomiting can elevate your blood sugar, it can’t elevate it that much. And while stress can cause some elevated white blood cell count, mine was way too high to be caused just by the stress of a new school year and a hectic two weeks of work. Etc, etc. 

By this point in my health journey, I was carrying around a file folder with every blood test I’d had that had been irregular, every hospital procedure, all referral paperwork, every test that had been run, all the files related to health. I also had a notebook where I had carefully recorded the dates of each episode, the symptoms I experienced, the notes from each doctor I had seen in the hospital or in referrals. I pulled it out to refer to when answering one of the ER doctor’s questions. He pulled up a chair beside my hospital bed and started paging through, asking me questions, flipping to the pages I would indicate. He looked and listened and asked for about fifteen minutes. He left to check a few of the tests he’d had run, and then he came back in and sat down again. 

“Something is definitely wrong,” he said. Tears immediately began to make their way down my face again, just sheer relief at being acknowledged and believed. “I don’t know what it is, though. We need someone smarter than me involved. I’d like to keep you here for a bit so you can talk to another much smarter doctor, is that okay?” 

I nodded, not excited about spending more time in the hospital, but happy to wait if it meant another doctor who would take me seriously and possibly have some ideas. I was prepared for an overnight in the hospital – over the last year of ER visits, I had started keeping a hospital bag prepared, waiting by my front door for the next time I would need it, sort of reminiscent of the hospital go bag a pregnant woman might keep, only to be grabbed with a whole lot less joy and anticipation. I had an eye mask, ear plugs, a portable battery for my phone, a book, sweatshirt, change of clothes. I was set for the night. 

Sunlight would have been peeking over the horizon by the time that I met Dr S, not that I got to enjoy it in the windowless ER patient room I was in. I assume that Dr S had been briefed by the referring ER doctor, and maybe he had already glanced through my charts. But he came in and listened to my story. Although I was used to telling it to doctors and could keep it as brief as possible to make it through without interruptions or losing attention, Dr S clearly didn’t need my abbreviated version. He asked question after question. He took thorough notes, looking at my notebook and carefully recording the dates of episodes that I had written there. He looked at my files and checked various test results, asking if I’d had this test or that procedure done. I told him how frustrated I felt so far – if I could get doctors to look at my bloodwork when I was in the hospital, each doctor would inevitably conclude that there was something wrong. But it felt like by the time that I felt better after each episode, the window had closed to figure out what was wrong until the next episode. Dr S reassured me that that was not the case, and there were, in fact, tests they could run when I was feeling fine that would still help us out. He told me he wanted to take a few minutes to read through everything else in my files and left for a bit. I dozed again. 

Dr S came back about an hour later. He had a few more follow up questions. Then he explained: “It’s Labour Day weekend. I have some tests that I’d love to run, but getting them done promptly on a holiday weekend won’t happen. You look like you’re feeling significantly better than when I first saw you. Would you like to stay and have tests run, or would you like to go home and come back for an appointment to see me?” 

It was true. At some point in the early morning hours, my chest pain had started to subside, as they always did, even without any treatment. The vomiting was successfully controlled by the medication the hospital had given me, and the IV was helping solve my dehydration. (The only two benefits I ever felt like I got from ER visits was to mitigate dehydration and get meds to help the vomiting end faster.) 

It was a holiday weekend. I was hoping to drive to my parents’ place to celebrate my dad’s birthday and be away from school before jumping into classes the following week. I was also exhausted. Despite using my ear plugs and mask overnight in the hospital, I had lain awake for a long time in an unfamiliar bed, was awakened when wheeled over to radiology for an X-ray, or awakened by the blood pressure cuff as it tightened on my arm every 15 minutes. I knew I would sleep better at home. 

“I see patients at the hospital on Tuesdays. Could you come in this next Tuesday and we’ll talk about how to move forward?” Dr S asked. 

I grimaced. Tuesday would be the first day of school. I explained how I would rather not miss that first day and asked if it would be okay to see him the following week instead. (This is a curious part of having my ill health show up in the pattern it had. As desperate as I was for an answer, I knew I would be more or less okay for at least a month since I had just had a major episode. Delaying a doctor’s appointment for a week was a risk easily worth taking in order not to miss the first day of school.) Dr S said he could understand how important it was to be at the first day of school and told me a delay of one week would not be an issue. 

A nurse came in to remove my IV. Dr S returned with a prescription he wanted me to start immediately. And he gave me a piece of paper with a word on it, a condition that he wanted me to look up to see if it resonated. Pheochromocytoma. 

After months of ER visits, tests, and specialist appointments, Dr S gave me the name of my condition the first time that I saw him. 

Of course, it still took a few more tests and imaging to confirm, but looking back, I am so impressed that he looked at the same clues that so many other doctors had seen and was able to put them together in a new way. 

I texted another friend to see if she was awake and could come pick me up and drive me home. Then I changed from my hospital gown back into my own clothes, this time opting to leave the heart monitor stickers on my skin until I got home. Despite the allergic reaction springing up under each sticker, it was easier to keep them on until I got home. I knew from experience that taking them off at the hospital would just mean that by the time I got home, my clothing would be covered with the sticky gel residue that coated each sticker. An EKG technician at the cardiologist had given me the helpful tip earlier that summer that oil – any kind, even vegetable oil or olive oil usually reserved for cooking – would help that residue come off. I had a bottle of bath oil in my shower just for such occasions. 

I got home and texted my parents to say I wouldn’t come home until the next day. I ate some applesauce that was regularly stocked in my cupboard for post-episode rehydration and some nourishment my body would be able to handle. I hadn’t had anything to eat in more than 36 hours, and I had lost 11 pounds in that time, at least before my hospital IV started my rehydration. And then I fell into bed and slept for some 8 hours. 

And that was my last ER visit for pheochromocytoma. By the end of the month, I had the first lab test results that indicated that Dr S’s hypothesis was correct. By the end of October, I had an MRI, and in early November I sat in a hospital exam room and cried when Dr S told me that the MRI revealed a small 2cm3 tumour on my right adrenal gland. I think he was a little concerned about my emotional state when I started crying, but I told him I was just so absolutely relieved to be reassured that we had a clear and definitive answer and clear path ahead now. 

That appointment was actually the last time I saw Dr S. He had already referred me to an endocrinologist who would refer me to a surgeon, and I was officially transferred from his care to the endocrinologist upon official diagnosis. 

My endocrinologist and surgeon are both excellent doctors and lovely people. But Dr S is the star of my story even though I was in his care for just over two months. He really felt like the first doctor to take me completely seriously and believe my story enough to investigate fully. I know my veterinary doctor sister would defend the other doctors I saw, saying that partly enough time is needed just to establish a pattern that a doctor can follow, enough evidence of the right kinds of symptoms. But Dr S was different from the other doctors I saw on my other visits. He is the kind of doctor that I hope anyone on their own difficult and mysterious health journey ends up with. 

Small things that he did made such a difference. On that first Tuesday non-ER appointment that I had with him, he asked me for my email address and sent me an email from his hospital account so that I could send him an email (and didn’t have to worry about misplacing a business card with his contact info). By the end of September when my lab test came back indicating high metanephrine levels, I sent him an email telling him that the results were in and were abnormal, asking what that meant for our next steps. He didn’t have an appointment time available that week and asked if we could talk by phone instead. I reminded him that I was a teacher and asked if it was possible that he call within a certain time frame when I wouldn’t actively be teaching my class (recess time and a prep period, if I recall). He was in a meeting until just before the end of that window of time but called me while walking back from his meeting, apologizing if I could hear the wind outside on his end because he was still walking back to his office. 

I am such a fan of universal health care. I know that our healthcare system is sometimes mocked by Americans as being inferior care for longer wait times. I would absolutely argue in favour of it, having gone through countless hospital visits, doctor’s appointments, tests, and a surgery and overnight stay in the hospital with a final bill of $0, paying only my insurance co-pay for my medications. I can’t imagine going through the stress of being sick while also worrying about how I would pay for my appointments, inevitably deciding not to go to the doctor because I couldn’t afford it. I also can’t imagine being sick and worrying about my illness interfering with work to the extent that I might worry about job security and therefore health insurance coverage. 

That said, I think some of my experiences with the health care system were because it is a system, not designed for individual cases. There are things that it is great at, and there are places where it needs improvements. Doctors are overworked, responsible for more patients than they can care for well. If I think about Dr S and what set him apart, it makes me think about the equivalency in my own work as a teacher. When I forgot to think about my students as individuals, each student created in the image of God with hopes, dreams, fears, abilities, and instead thought of my work as tasks to complete, systems to set up, things to get done, it was inevitably my students who suffered – and my relationship with them. In the system of health care, to many of the ER doctors I saw, I was an item on a checklist, a patient to see before going home, a set of tests to run, and when they were ready to leave and there were no answers yet, I was given a handful of referrals. I was an individual to Dr S. I was a person with a unique experience and story. 

May all of us, in whatever our work is, have eyes to see others as the individuals that they are, made in the image of God, with hopes, dreams, fears, abilities. Especially during a global pandemic when fear so easily rules our actions, may we see others as the humans they are. May we take the time to get to know them, to understand their hopes and fears, to celebrate their dreams and abilities. 

If you’ve made it this far in the story, congratulations! I feel like a lot of what I’ve written here and on social media lately has been pheo-related, but it has been a major, MAJOR part of my life, and writing about this experience has been hugely cathartic. If you’ve read my earlier post “Life After Pheochromocytoma”, then you have some idea of how drastically a diagnosis and surgery has changed my life. 

I want to end with something that might not apply to many people. But if you’ve stumbled across this story while in the middle of your own medical mystery, I want to offer some pieces of advice and hope. This advice can probably be found in lots of places online, but it might be helpful to read it in the context of my story, or hear it again, or it might perhaps even be the first time you’ve come across such ideas:

Advice

  • Be your own advocate. No, you shouldn’t need to be. But sometimes you have to advocate for yourself more strongly than should be necessary. Doctors are busy. They also aren’t experiencing your unique symptoms. You know yourself. Trust what your body is telling you. Insist on being listened to and taken seriously. If you are not taken seriously, find a doctor who will take you seriously.
  • Make documentation. It is so helpful to be able to refer to dates, records, and notes in order to be taken seriously. It is also helpful to look back at notes after an appointment or hospital visit because sometimes hospital visits are a blur. You’re not necessarily feeling your best. 
  • Take good care of your mental health. Not being believed is incredibly frustrating. Starting to not trust your own body is even worse. Do what you can when you can. Don’t feel guilty for the things that you can’t do when your body doesn’t let you. 

Edited to add:

If you would like to hear a conversation that encapsulates my ideas of different kinds of doctors and medical experiences, check out Kate Bowler’s conversation “Medicine with a Soul” with Victoria Sweet on her podcast Everything Happens.

Posted on by bethanypasma · 3 Comments

Life After Pheochromocytoma

I had an adrenalectomy on Friday, March 13th. Yes… Friday the 13th. My Grumpy Cat calendar was so appropriate for that day that I saved the calendar page and have it hanging on my fridge.

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Many of you have probably read my post “Life with Pheochromocytoma”. I know that my dad has practically been my publicist as far as that post goes, telling lots of friends and extended family members that they can find some insight into my experiences if they search for that post here on my blog. 

But my life has changed so significantly in the five weeks since my surgery that it is definitely time for another update, this one celebrating all the ways that my life has changed. So here we go: Life AFTER Pheochromocytoma. 

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Ready for surgery! Feeling so fortunate to still get into surgery just before hospitals postponed elective procedures.

First off, I feel INCREDIBLE! I can’t describe strongly enough how healthy I feel, how full of vitality. It turns out that living with a tumour for 4+ years really changes your baseline for what healthy feels like. For weeks 2-4 after surgery I would wake up, sure that I couldn’t feel better than the day before, only to be amazed at feeling better than I could remember feeling ever before. There was the obvious post-surgical recovery feeling better that I expected, but more than getting over incision pain and sleeping off side effects of anesthesia, I felt better, healthier, stronger every day. 

 

By every measure that I can take, my health has improved since surgery. My resting heart rate dropped 30 beats per minute in the five months that I was on alpha blockers, but in the weeks post surgery, even without any medication now, it has dropped 8-10 bpm further. Unlike many people with a pheochromocytoma, my blood pressure was never shockingly high. But on medication, I was getting readings generally in the 120s over 70s. Now it’s more like 95 over 65 – lower than most of the readings I was getting in the two weeks before surgery when my medication dose tripled! 

 

Since I’m not on medication any more, I don’t have the frustrating side effects that come along with pharmacology. Alpha blockers generally cause nasal congestion, and with the tumour, any decongestants (whether for the side effect or for a cold) were strictly off limits. After a couple of weeks without surgery, that congestion completely disappeared. I also had trouble with swelling in my feet and ankles, and this was particularly noticeable once my medication dose tripled. That has totally disappeared since surgery!

 

Of course there were my somewhat regular symptoms – a strange shaky feeling, an internal anxiety, a major spike in heart rate if something scared me, the inexplicable feeling that I attributed to blood sugar issues. They are all completely gone. I haven’t had any lab work done since surgery, especially given the COVID crisis, but I am completely sure that my adrenaline levels are back to normal just given how I feel. 

 

Those regular symptoms were pesky but didn’t feel life threatening – not like the massive spike in adrenaline I experienced every other month or so. I can only say what a relief it is to know I will never experience another one of those. I will never wake up again only to dread the next 48 hours, knowing the inevitability of worsening chest pain, tremors, hours of vomiting. It is an immense relief not to have to have the inner debate about whether or not I should go to the ER. (Even pre-diagnosis, it was an inner debate. I hated going to the ER when it meant being told that I was having a panic attack, when there was nothing that really helped me feel better, when I left with more questions than answers, and when the only positive things were being hooked up to a heart monitor and IV and knowing that at least if something went drastically wrong I was already at the hospital.) Especially in the midst of the current COVID pandemic when going to the ER feels scarier than staying home, it’s such a relief to be free from worrying about when the next episode will occur. 

 

During major episodes, especially pre-diagnosis, ECGs showed a temporary heart arrhythmia called Long QT. I made several trips to a cardiologist, did a stress test, and wore a holter monitor for a long weekend. Now I am empowered knowing that despite the stress to my heart during the major episodes of adrenaline, my heart is healthy and wasn’t damaged by the tumour. In fact, now, without the tumour, I can actually get my heart rate up during exercise without feeling like I’m endangering myself. 

 

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No more holter monitors! I wore this one for 72 hours on a weekend when my family went to the beach. No swimming for me! And my poor skin is of course allergic to the stickers…

I want to end by noting how incredibly fortunate I am and how blessed I feel for the timing of my surgery. COVID19 was declared a pandemic by the WHO on March 11. On March 12, the Ontario government announced that schools would be closed for two weeks after March break. My surgery was on the 13th. Two days later, the Ontario government announced that it would be asking hospitals to cancel elective surgeries to clear hospital beds for the impending COVID crisis. Elective surgeries aren’t surgeries that people are choosing to have, by the way. They are non-emergency surgeries – surgeries that are scheduled ahead of time. My post-op appointment ended up happening through a phone call with my surgeon, and when I told him how fortunate I felt just to have actually had my surgery, he told me that even his cancer surgeries have been postponed indefinitely. Knowing how I felt in the time leading up to surgery, I can only imagine what it would be like to have had a surgery delayed and not to know when it will finally happen. I can only imagine what my mental health would be if I were once again waiting and fearing for my health in the meantime. I empathize so deeply with anyone in this situation. 

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Please enjoy this picture of me with my sister just hours after surgery. Barely conscious, extremely groggy and nauseous. Last time feeling this bad because of the pheochromocytoma!!!

Posted on by bethanypasma · 5 Comments

Life with Pheochromocytoma

I have a pheochromocytoma, and it really, really sucks. I’m writing today from deep in an episode. My hands are shaking so much that it is taking some time to type the correct keys, and my brain feels extremely wired but it’s making it hard for me to keep one single train of thought going for too long. 

Today is probably my last acute episode. They tend to happen every two months or so, and I’m 27 days out from surgery. [Insert dancing and shouts of “Hallelujah!” here.] I just absolutely cannot wait to have surgery, and I know I’m going to be okay. But today isn’t okay. 

It’s actually loads and loads better than what it used to be when I’m in the acute phase. Medication is doing its job. But with some 20 times the normal level of adrenaline coursing through my body, medication can’t prevent all the symptoms. 

It took me a long time to get a diagnosis, and I haven’t been able to find a whole lot of people’s stories online. But the ones that I’ve found and read have given me a sense of solidarity, a sense of understanding I’d been looking for. So I thought maybe I’d write a bit of my own story here, and maybe someone will find it and it will give them hope. 

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Some quick basics about Pheochromocytoma for you

My story actually stretches back to about four years ago. Somewhere around there, I started having these weird moments where I would wake up feeling shaky and with a weird feeling like a pit in my stomach. I thought it was low blood sugar. I would eat, and the feeling would eventually go away. I told my doctor, and she had me do a fasting glucose test. It came back as normal, and she told me I was fine. That was the end of it. 

I kept having the feeling, though. Eventually it wouldn’t really go away after I ate. Then in June 2018, I woke up with it, went to school and taught all the way through it, came home, and threw up. And threw up. And threw up. And then in September, the same thing – only with chest pain and a sense that my heart was pounding. When you work at a school, there’s pretty much always some kid who’s going home because they’re throwing up. It’s pretty easy to blame it on a stomach bug. 

But then the same thing happened in November, and I realized this was a pretty solid pattern. I took myself to a hospital ER, where two nurses and a doctor suggested that I was having a panic attack. The doctor actually came back and apologized when he saw my lab work – my results all showed something very wrong and he told me apologetically that they wouldn’t be able to discharge me. I cried both out of relief and frustration – it was the day of parent-teacher conferences and I didn’t see how I should have to miss those… I knew that if the pattern continued, I would actually feel okay again in a couple of hours. Okay, more like most of the day. 

I ended up being transferred to another doctor who was very empathetic and who I felt really listened and asked thoughtful questions. With the vomiting, pain, and high levels of inflammation from my bloodwork, she suggested gallstones, and I was eventually given an ultrasound which confirmed that I do have a gallstone. 

I left the hospital with a sense of relief, booked an appointment with my family doctor, and discussed a referral to a surgeon. I couldn’t believe how quickly that referral happened, and I went to the surgeon with nervous excitement. He looked at my labs, asked me some questions, and very quickly told me that my problem was not gallbladder related. Back to square one. 

The next six months were a cycle of feeling totally fine until an episode, then waking up with a sense of dread when the next one started, and either deciding to go to the hospital where I would eventually be sent home with a sort of metaphorical shrug of the shoulders or deciding to just stay home and tough it out. By June, I was gathering a medical file of all of my tests, ER visits, and my own data. I was being referred to numerous specialists who would basically say, “Whatever it is, it doesn’t seem like it’s in my field…”

The summer was a lovely break, and I felt good. I completed a summer course, went to Guatemala, took my parents on a road trip, went church camping, and everything was good. I returned to school, sat through teachers meetings, set up my classroom, met parents and students at our open house, and I felt good. Then the morning after the open house, I woke up and symptoms had started again. I woke up actually thinking I had a migraine. I took an Advil and went back to bed, texting my parents that I wouldn’t be coming to see them that day. I woke up an hour later and realized what it really was. My hands were shaky. I felt like I had a pit in my stomach. I couldn’t shake the sense of dread. As the day wore on, I felt extremely wired, like I couldn’t sit still. Eventually, I felt the band of pressure tighten across my chest. It felt like my heart was beating hard, working for every beat. Soon the vomiting started, and it wouldn’t stop. I decided I wasn’t going to the ER – it didn’t feel like the ER did anything for me anyway. It was just hours of torture and waiting and vomiting, and doing it in front of other people instead of in the comfort of my own home where at least I could alternate between couch and bed and bathtub and had Netflix to sort of distract me out of my misery. 

But it was bad. It was really bad. It amazes me that this condition can take you from feeling perfectly healthy and good to I might die at any moment in a few hours. So eventually I went to the hospital, taking my folder of medical files along with me. The ER doctor was so kind, and when he started asking questions and I pulled out my files to show him answers, he wasn’t annoyed. He sat on the edge of my bed and paged through my files, occasionally asking questions. I would point him to answers in my file. He said to me, “We need to get someone smarter involved here. Whatever this is, I am out of ideas.”

Enter my new doctor, internal medicine. He came to see me in the early morning hours. He also paged through my files, asked me multiple questions, went and did some thinking and research. He came back again to talk to me around 9 in the morning. He had some ideas he wanted to follow up on, and he told me I could stay for some testing, but with it being Saturday on a holiday weekend, he said I would probably not be able to get the tests done that day. I knew my symptom pattern well and my chest pain was lessening and heart palpitations were decreasing, so I knew I would actually be able to go home and sleep. We agreed that I would come into the hospital for an appointment to see him. But before I left, he gave me a note with the word pheochromocytoma on it. 

Let me summarize the next two months: multiple hospital visits. Approximately one a week. Testing, follow up testing, different testing. By the end of September, I had the results back which indicated pheochromocytoma was very likely, also meaning I could take the right medication. By the end of October, I’d had an MRI. By the beginning of November, I had my final follow-up with the internist and was under the care of an endocrinologist, referred to surgery. Now that we knew what to test for, we could run testing while I had symptoms and very easily discover the results – the crazy amount of extra adrenaline coursing through my system. In December, I had a consult with the surgeon. At the end of January, I received a surgery date. Now here we are, 27 days away from surgery. 

Pheochromocytomas are extremely hard to diagnose. They often come with high blood pressure, sweating, and headaches, which could be attributed to any number of conditions. Panic attacks are an actual symptom of the condition. This makes me feel approximately 1% more gracious to the nurses and doctor who suggested that I was having a panic attack. But it makes me even more grateful and amazed by the doctor who suggested it to me before I had even left the ER on my last ER visit. 

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This take on a pheochromocytoma amused me. Pretty accurate for the “typical” pheo… not exactly my symptoms though.

You may be familiar with the saying, “When you hear hoofbeats, think of horses not zebras.” This aphorism was created by Theodore Woodward, a professor at the University of Maryland School of Medicine to remind medical students to choose the common explanation over the exotic one when it comes to diagnosis. In fact, neuroendocrine diseases use a zebra-patterned ribbon to represent this exact idea – that sometimes the explanation of the hoofbeats actually is the zebra. 

The incidence rate of pheochromocytomas is somewhere around 2 per 1 million people. However, many researchers think that number may be quite low since many pheochromocytomas aren’t found until autopsy. The average time from onset of symptoms to diagnosis is three years. This all just makes me even more grateful and amazed to have received a diagnosis. 

So I’m getting through this awful day by counting my blessings. 

I’m so very grateful for the diagnosis that reassures me – no more wondering if I’m going to die. 

I’m so very grateful for the medication that diagnosis provides – symptoms are present but manageable, especially compared to previous episodes. 

I’m so very grateful for universal health care. I’m not hundreds of thousands of dollars in debt. When I pondered not going to the hospital, it was never because I couldn’t afford it. 

I’m so very grateful for a doctor who not only diagnosed me, but provided the most excellent patient care while we searched for a diagnosis. 

I’m so very grateful for friends who prayed for me, who took care of me, who texted to see how I was, who gave rides to or from the hospital. 

I’m so very grateful to God for being with me through all of this, using it to teach me more about who God is and who I am.